Heads-up sleeping has dramatically improved my daily functioning. I went, in a week and a half, from bedbound to reasonably active–out of bed most of the day, light housework, getting out to social events, etc. Although it sounds like it doesn’t help everyone, it seemed to take away most of my POTS and much of my exhaustion, and to greatly improve my stamina–just as saline infusions do for some people – Throughhiker

Refreshing sleep doesn’t come easy in ME/CFS. Could a simple change in head elevation help?

This blog is more about lying down than sleeping; it just so happens that we spend much of our time lying down when we sleep. Some researchers and doctors propose that lying flat for long periods of time, whether sleeping or otherwise, is simply not very good for some people’s brains. In fact, they believe it can cause all sorts of problems.

It all starts with too much blood flowing to the brain. Of course, many people with chronic fatigue syndrome lie down in order to get more blood flow into their brains but if they’re right too much of a good thing might be a bad thing.

Cardiovascular Dysregulation?

Could brain blood pressure regulation be off in ME/CFS/FM as well?

Just as there are systems in the body that help propel blood into the brain when we stand other systems prevent too much blood from hitting the brain when we lie down. If those systems are faulty, spinal fluid can gather in the ventricles increasing intracranial pressure and causing the brain to be bathed in excess fluid. That excess fluid means, ironically, reduced circulation and the flow of oxygen and sugar to the brains cells.

Studies suggest that the cardiovascular regulatory system is ‘off’ in ME/CFS; heart rates are high even during sleep, blood pressure regulation is poor and the response to exercise is inhibited. Some researchers think the arteries are dilated and the small blood vessels are contracted. Is it possible that blood pressure regulation in the brain is a bit off as well?

The Space Connection

Singer notes that zero-gravity situations causing increased brain pressure and that NASA mimics the effects of zero-gravity by having people lie down for long periods of time. In fact, space researchers have contributed many important insights into the problem of deconditioning by having astronauts simply lie down for long periods of time. .

Singer reports space researchers have found that brain circulation is optimal at about a 30 percent incline of the head of the bed. His own lay research suggested migraines might be able to be relieved or eliminated by heads-up sleeping.

Ultimately they suggested that many conditions associated with increased intracranial pressure might be able to relieved using this technique.

Intracranial Pressure?

Did someone say intracranial pressure? Intracranial pressure (ICP) refers to pressure inside the skull. Dr. Raymond Perrin (DO, Ph.D) believes brain congestion with reduced lymphatic flow plays a key role in ME/CFS and doctors report that elevated spinal fluid pressure is common. Just this month a small study suggested that increased blood pressure in the brain is present in chronic fatigue syndrome. This very preliminary study found that 40% (of 20 people) had moderately high or greater intracranial pressures (>20 cm Hg or greater) during lumbar puncture.

Increased intracranial pressure could cause headaches and head pain.

They proposed these patients have idiopathic intercranial hypertension (IIH), a condition characterized by migraine, headaches and ‘visual disturbances’ and often found in obese, young women but which can be found in any person at any time. Headaches, dizziness, depression, hyperventilation,joint pain, anxiety, visual disturbances and fatigue are common.

Increased intercranial pressure can cause sinus, eye, ear, face pain. Sydney Singer, an anthropologisst and lay researcher, proposes that migraines can be triggered in some people by lying flat for too long. (If you have migraines or headaches you might ask, if you spend a lot of time in bed, if they started after that began.)

A lot of face pain and feelings of pressure can be in present in ME/CFS; pressing on a spot anywhere in my upper face, for instance, will elicit pain. A continual case of mild sinus congestion could, I suppose cause that, but narrowing of the transverse sinuses is also sometimes associated with IHH. Could ‘brain congestion’ play a role.

Singer takes his theory to the limit proposing that all manner of brain disorders (migraines, strokes, ADHD, SIDS, sleep apnea, etc.) can be effected by this problem.

Research

Researchers have also studied the effects of head-up. A small study suggested that a 10% incline in the upper part of the bed resulted in reduced problems with orthostatic intolerance and, guess what…blood volume after 4 months in people with orthostatic intolerance. (Heart rate and blood pressure did not change.) Happily, for the really hard to treat cases, the most severely orthostatically challenged people had the most improvement.

I will ask the Dutch cardiologist Visser in the series ‘Science to patients’ about this. He measures the blood flow to the brain of ME patients. Lying down, sitting en standing. Wonder what he thinks of this!

This is a very interesting article, Cort. I read up on it a few years ago and even had a bed-length foam wedge cut to my spec for about £120/$160 but felt worse lying down on it. Someone had raised a concern (not sure if it was theoretical) that sleeping on a tilt could result in supine hypertension for some people and that made me nervous about attempting to sleep in that position.

Lots of us POTS people have to sleep with our heads elevated. It is more common than not for us to do this. I use pillows – at least three at my head and gradually slope others down under my back – so the support is there. I also have to put pillows under my arms – as the other pillows don’t seem to give enough support there. Then I put a pillow under my knees to have the right bend in my knees with the upper body being at such a slope. My husband says it’s my cocoon. But, it for sure makes a difference. I can not lie flat – it will give me issues with breathing and bring on all sorts of symptoms.

I tried just elevating the head of my bed and hated the full body angle. It wasn’t comfortable. And for sure, I didn’t sleep well.